“I never knew how my outlook on life could change in just a moment. I never knew the importance of adapting to change when life throws you a curveball. And I never knew I could be so proud and love so deeply. Here I was married to a great guy, with a beautiful 1.5-year-old daughter, Georgi, and newly pregnant with our second baby. As I walked out the door to a routine prenatal appointment, I yelled to my husband, ‘Hey, they’re going to ask me about that prenatal genetic blood test, we should just do it again right?’ He said, ‘Yeah, sounds good,’ and I left.
With my first daughter, we were told if you get this test, you will know about genetic abnormalities and can find out the gender early! Cool, let’s do it. With my second, we decided to wait until birth to find out the gender but proceeded with the test anyway. It seemed like a routine thing and was poorly explained. In hindsight, we should have asked more questions. We didn’t know it would come with so much uncertainty.
2 weeks later, my mom was visiting from out of state (she loves being a ‘GaGa’ and comes often). And in one moment, my life changed. We were sitting in my garage waiting for my new mattress to arrive and I was playing with my phone, scoping out the weather, scrolling through Instagram, and checking my email. ‘Hey, Mom, those test results are in. I haven’t received a call from my doctor so I assume everything should be fine. I’m going to open them.’
Trisomy 21. It was a term I don’t think I had ever heard before but as I opened the results there it was staring me square in the face: ‘positive for Trisomy 21.’ After a quick Google search, I read Down syndrome. ‘Mom…,’ I was uncontrollably shaking and could barely get words out, ‘What does this mean?’ My heart was in my stomach, I felt like I couldn’t breathe. Thank goodness my mom was there because I was an unmovable puddle. She went into full mama bear mode, told me it was going to be okay, and got a hold of my doctor right away.
We quickly learned my baby had a 68% chance of having Trisomy 21 (three copies of the 21st chromosome, also known as Down syndrome). The next few days were a complete blur. I was either crying, Googling, or pleading with God — this has to be a mistake. I had very little knowledge of Down syndrome so there were a lot of preconceived notions and negative thoughts floating around in my head. ‘Our life will never be the same, my marriage is going to suffer, having a sibling with special needs is going to be a burden on my daughter.’ On and On. For a good week, I was in a spin cycle of negative thoughts. But why? I was reacting based on fear… and fear of what? Something I knew nothing about! As I came out of the negative fog, I also started looking at my life through a different lens. A clearer lens. Why wasn’t I more grateful? For my health. For my loved ones’ health. Why don’t I live each day with a positive outlook? Am I accepting enough of other people’s differences? Or my own unique qualities? The questions swirled around and around in my head and I was starting to realize although my life might change, it might be changing for the better.
Because my pregnancy was considered high risk, I went to the doctor often and mostly alone because of Covid restrictions. It was soon discovered our baby possibly had a multicystic dysplastic kidney, a possible AV Canal heart defect (that was confirmed after birth), and was measuring very small due to placenta issues. We declined an amniocentesis test because we loved our baby no matter the outcome and lived out the rest of the pregnancy with uncertainty but hope for health. In the last half of my pregnancy, we had multiple appts a week to check the umbilical cord blood flow and baby’s well-being (there is a very high chance of miscarriage and stillbirth with babies who have Down syndrome so they wanted to keep a close eye on us). I was on pins and needles before each of those ultrasound appointments. Due to the poor cord flow, there was a high chance they’d admit me to the hospital for 24/7 monitoring until they delivered the baby. That meant possible weeks unable to see my daughter, Georgi, due to Covid hospital rules. Every time I left for an ultrasound appointment, I hugged and kissed her like it was the last time I’d see her for weeks.
Thankfully, we made it to 37 weeks, which is when we found out about my gestational hypertension, the reason I needed to be induced a few weeks early. The day we met our baby, we walked into the hospital not knowing if we were having a boy or a girl and not having an official diagnosis our baby would be born with Down syndrome. Labor went fine and our baby came quickly but was whisked away into a different part of the delivery room and not placed directly on my chest. I heard silence for what felt like minutes. And then, finally a cry!
I looked down at the doctor and my husband and asked, ‘So….did I have a baby girl or a baby boy?’ I watched them both look at each other for the answer and I smiled. Neither one of them looked for the gender before our baby was taken to be examined by the other medical staff. Finally, one of the nurses held my baby up and I saw HER for the first time, a baby GIRL. My Millie. When I looked at her, I knew immediately she had Down syndrome but my heart did not sink into my stomach like I imagined it would. I loved her. I wanted them to give her to me. She was absolutely perfect and she was mine.
Our hospital stay unfortunately didn’t end there. Being small (4 pounds and 15 ounces) combined with her low muscle tone (a characteristic of Down syndrome) made eating a little more difficult for Millie and she had to stay in the NICU. We lived about an hour away from the hospital and my husband and I (the only two that could see her) took turns commuting to the hospital to be with her. NICU life is tough and having to wear a mask, listening to the noisy alarms, and trying to get comfortable holding her amongst the tubes and wires made it hard to bond with her like I had imagined. But finally, after 3 weeks, she was able to meet her big sister who was anxiously waiting at home.
When we first discovered our baby might have Down syndrome, I immediately feared for Georgi and how a little sister with a disability might affect her life. In the last few months, I have watched their bond and realized, yes, their relationship might look different from what I originally imagined but Georgi, on the other hand, was too little to dream up an image of her sister. For Georgi, this is her beautiful reality. She will grow up learning about inclusion, empathy, and compassion. She will be accepting of others and love what is unique about herself. She will learn to be patient, kind, and helpful. I know there will be tough times ahead but ultimately, having Millie as a little sister will make Georgi a better person, just as I am realizing having Millie as a daughter, will make me a better person.
I hope by sharing our story, I can help others who are struggling with a prenatal or at-birth diagnosis feel hopeful for the future. I want you to know it’s okay to feel everything you are feeling. It’s okay to grieve for the baby you imagined. It’s okay to feel mad, terrified, confused, nervous, and overwhelmed. But I don’t want you to feel alone. I encourage those with a recent diagnosis to connect me or others who have been in the same situation and follow our stories. There is a lot of negative and outdated information out there about Down syndrome and many times, learning more about Down syndrome from the people who are closest to it will alleviate those fears and provide you comfort.
My Millie is a beautiful blessing. Just like all babies are beautiful blessings. She is happy, courageous, and strong. I am so proud of her and each one of the little milestones she accomplishes (or Milliestones as I like to call them). She has already taught me the importance of so many values: perseverance, adaptability, patience, gratitude, and most importantly, love. Pure, unconditional love! Love for her and for my family. Love for myself. Love for humanity. And the love for life!”
This story was submitted to Love What Matters by Nikki Geib of Lake Mills, Wisconsin. You can follow their journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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